First, who is Baby Joesph Maracchli and second, what’s the big deal about his medical care?
Joseph Maracchli, the son of Lebanese immigrants, was born on January 22, 2010, and his parents say they noticed he couldn’t eat or breathe properly and wouldn’t open his eyes or cry. The family, who lives in Windsor, Ontario on the Canada – United States border near Michigan, took him to a Michigan hospital in June 2010, where he was diagnosed with a metabolic brain disease, which the doctor said would make him developmentally delayed. Maracchli was treated and returned to normal after a month. However, in October 2010 he developed a fever and was breathing rapidly and was rushed to the emergency room and later transferred to the London Health Sciences Centre in London (LHSC), Ontario. The hospital said he was in a persistent vegetative state from which he would never recover. Maracchli’s family wanted the staff there to do a tracheotomy so that they could take him home and he could die in the care of his family instead of a hospital. Sounds pretty reasonable, doesn’t it?
What is not reported very widely is that the couple’s first child who suffered from the same condition did receive a tracheotomy, at the parents insistence, and died a horrific death at home. That child suffered from infection, followed by pneumonia and eventually choked to death… it just took six months of additional suffering for this to happen. The physicians were rightly concerned on behalf of the quality of life of their patient to do as the family asked.
Eight physicians at LSHC were unanimously of the opinion that Joseph had no hope of recovery, and there was no possible treatment that could reverse his condition. They quite rightly pointed out what was obvious that he would never get out of bed nor interact meaningfully with his environment. As responsible and caring medical professionals, the doctors sought a second opinion from colleagues in Toronto. The director of the critical care unit for Sick Children’s Hospital in Toronto (a world class facility and recognized leader for pediatric medical care) there agreed that further treatment was futile. Joseph’s doctors therefore proposed removing the tube that was assisting his breathing. If he could breathe unaided, he would go home to be cared for by his parents. If not, he would be given medication to ensure that he did not suffer, and allowed to die. A Canadian Superior Court judge ruled in favor of the Canadian hospital, ordering the life support removed.
Enter our heroes, the Priests for Life, those celibate men of the cloth who (incredibly and without shame) think their religious beliefs equip them with the kind of god-soaked moral knowledge necessary to determine proper medical treatment over and above a team of highly trained and specialized medical professionals who actually care for children as their daily job. Let us keep in mind that there has never been a suffering life these meddling priests have not tried to prolong. The Terri Schiavo debacle immediately comes to mind.
Peter Singer, professor of bioethics at Princeton University picks up the story:
Little Joseph Maraachli is a new poster boy for the “pro-life” movement. But what has happened to him should instead teach us what to do – and what not to do – if we are really serious about saving human lives. The 13-month-old from Canada, who has been having medical treatment for most of his short life, suffers from a severe neurodegenerative disease. He has difficulty breathing on his own. His head is small for his age and has not grown for three months. He has seizures. His pupils do not respond to light or follow a moving object. His movements are not purposeful.
Then Priests for Life, a Catholic -abortion and anti-euthanasia organization stepped in, chartering an air ambulance to fly Joseph from Canada to Cardinal Glennon Children’s Medical Center, a Catholic hospital, in St. Louis, which will perform the operation the parents requested.
“We Rescued Baby Joseph!” says a page on the Priests for Life website. The organization’s director, the Rev. Frank Pavone, says he has been told that it could cost as much as $150,000 for Joseph’s stay in the pediatric intensive care unit. That doesn’t include the cost of the aircraft, which would have added thousands more to the bill. Priests for Life is, of course, asking its supporters to donate to pay these costs.
Here’s the irony. According to the most rigorous charity evaluation agency in the country, GiveWell.org, you can save a child’s life for about $1,000. All you have to do is give the money to their top-rated charity, Village Reach, which delivers vaccines and other urgently needed medical supplies to rural areas in developing countries.
If Priests for Life were really serious about saving lives, instead of “rescuing” Joseph so he can live another few months lying in bed, unable to experience the normal joys of childhood, let alone become an adult, they could have used the money they have raised to save 150 lives – most of them children who would have gone on to live healthy, happy lives for 50 years or more.
We’ve seen such things happen before. In 2005 the anti-abortion movement put a huge effort, and large sums of money, into “saving” Terri Schiavo. In the end, after Congress had been recalled specifically to enable a federal court to hear the case, she was allowed to die. An autopsy showed her brain had been severely and irreversibly damaged.
We can obsess over Joseph and Terri – or we can make an honest effort to save the lives of countless children whose names we may never know. It is our choice.
But the Priests for Life don’t want to save lives in the sense of protecting the dignity of those who are already alive yet suffering; they want to prolong the biological functioning of a body regardless of the suffering… the younger the better and a fetus especially, even if it kills women to do so. Since becoming involved in the medical treatment of Baby Joseph, the Priests for Life have mobilized support from the likes of the Hope Network and the legions of catholics and christians who think these groups do god’s work. Now the medical staff at LSHC have been the recipients of the kind of faith-based love the anti-abortion crowd – championed as they are by Priests for Life – sends out to those who disagree with their beliefs: hate mail and death threats.
Oh, I can hear the faithful claiming loudly that those extremists don’t represent the mainstream religious.
But they do.
You see, Priests for Life and the anti-choice crowd are no different than the mainstream believers in that they don’t give a rat’s ass respecting your life; they care only for life, which according to their beliefs belongs not to you but their god. And they will continue to act accordingly not to respect your rights and freedoms as an autonomous individual where dignity of personhood must reside, if the term ‘personal dignity’ is to have any personal meaning, but as god’s Stormtroopers out to protect what belongs to him. That’s why they’re theological thugs and are empowered by those who respect their beliefs about what god owns over and above respecting your personal dignity.
Are ‘honestly held beliefs’ reason enough to justify legal discrimination?
“All persons are equal before the law and are entitled without any discrimination to the equal protection of the law. In this respect, the law shall prohibit any discrimination and guarantee to all persons equal and effective protection against discrimination on any ground such as race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status.” (Article 26, UN covenant on political and civil rights)
To support legal discrimination in a particular case means you must provide a reasonable justification to the benefit of all for that particular exemption against the general principle. This can be (and is) done when that justification can be shown to enhance the public good. For example, we can legally discriminate against all of us who have not achieved the age of majority or all of us who have been shown to be incapable of being responsible for our actions. Legal discrimination is permissible without breaking the principle of the covenant… but the justification must be the same FOR ALL.
Now let’s consider the idea of ‘honestly held beliefs’ to be the metric for varying what equality rights mean. The question can be formulated this way: does an ‘honestly held belief’ by another person constitute a reasonable justification to the benefit of all in your mind for the loss of your own equality before the law and the loss of its protection to guarantee them? Are you willing to have your legal rights be subject and hostage to the variability of another person’s honestly held beliefs?
There are a couple ways to come at answering this.
The straightforward answer here is either Yes or No. There is no middle ground. You are either willing to allow others (based on their ‘honestly held beliefs’) to determine the quality of your legal rights or you are not. The metric at work here is belief, and rests in the willingness to have your legal equality rights rights rest not with you, not empowered in and by the law, but in the belief-based opinion of others. This breaks the principle that currently supports legal equality for all of us… not just against those whose legal rights and protection you wish to limit for whatever beliefs you may deem important enough but your own. Supporting the notion that ‘honestly held beliefs’ is sufficient to devalue equality rights to personal preference of beliefs means that you do not support the principle that upholds your own.
The extent of privilege our societies grant to religious belief and the institutions and speakers who represent them is truly astounding. For example, returning to the UN covenant on political and civil rights, we find the following:
“Discrimination is allowed if it is based on genuine religious beliefs or principles. This includes the actions of religious bodies or schools.”
Take a moment and think about that. What does it really mean?
Well, it means that the previous principle for all has been replaced in practice by the beliefs of some. It means all people are not equal before the law; our shared equality rights are in fact subject to the religious beliefs (and principles contained within them) of others, others who would deny them first for ‘honestly held beliefs… before any other grounds of justification are introduced! Where is the universal justification for this discrimination that demonstrates its fairness and impartiality to the good of all? It’s absent; what we have are lot of assumptions and attributions and arguments and conclusions unsupported by compelling evidence. This is faith-based belief in action… simply presumed to be justified because it is religious. And that’s religious privilege in action and it undermines the very principle of YOUR legal rights, YOUR legal equality, YOUR legal protections. This religious privilege buolt on faith-based beliefs is incompatible with the very principle of equality law.
Another way to understand and appreciate the scope of craziness needed to sustain the argument of privileging ‘honestly held beliefs’ over and above and preceding equality rights for all is to apply the same reasoning, the same privilege, the same lack of independent justification to some other area of public interest. We have a host to choose from but let’s take a public water supply for our analogy and see how well the justification works.
The management of that public water supply is based on the principle of providing clean water for all… and we are all in agreement that this water should be safe for all to drink because all of us drink from it! But let’s say some people in the management team decide that certain privileged exemptions to that principle are justified by the ‘honestly held beliefs’ of those involved with providing this service, making the water supply safe for some but not for others. When people complain that their water supply is, in fact, contaminated – because some people honestly believe that the addition of industrial waste products containing toxins and carcinogenics to this part of the water supply but not that part at the request of certain industries to eliminate their waste is a net benefit to all, while reassuring the rest of us that we will continue to receive only a clean water supply – how is it a justification that doesn’t directly undermine the principle of clean water for all? Would the same exemption be allowed, for example, if the quality of everyone’s water supply – including the captains of these polluting industries and the management team themselves – were to be subject to the same vagaries of who received what quality of water when? Or would we as a municipality stand united and insist that the water supply be kept clean for all? Sure, the industrialists might complain that they have a real problem with their toxic wastes, but why should the quality of our water supply be their solution… any more than threatening our shared legal rights of equality be the solution to the demands of these religious for privilege to exercise their bias and discrimination in the name of the public good?